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Sunday, October 28, 2012

Last Tuesday (10/23) I went for my second epidural steroid injection for my herniated disc went much better than the first one-- that was an excruciating nightmare). This procedure the needle was positioned to better address the continuing pain in my left leg - it was a L5-S1 transforaminal ESI, L side, for those interested in Googling). It was injected in 2 places. It hurt a lot, but this time it didn't induce blood-curdling screaming or cursing in the operating room.

The good news

The good news is that within a day I was feeling a LOT better. Over the weekend I was able to walk through the grocery store to do our normal shopping, something I couldn't complete because of the pain. The pain has been replaced by a general feeling of stiffness in my back, but it's not pain.

The bad news

The numbness from the nerve damage that travels down the left side of my leg, along with the weakness (it doesn't respond to the knee-tap reflex) and complete numbness of my left foot remains. The anesthesiologist who performed the procedure said this may not go away with the shot or surgery. It's more than annoying; it's more like neuropathy, which I already have from diabetes, but now it's my whole left foot.

Am I cured?

No. How long the relief will last is uncertain - there are no guarantees, no sure timelines. The defect in the spine remains. The conventional wisdom:

Although this procedure may give excellent pain relief, it will not fix the source of the “pinched nerve”. However, by reducing the inflammation of the nerve and with the help of some exercises provided by your orthopedist or physical therapist, you should have months to years of freedom from pain. And although you may have to return for a repeat series of Epidural Steroid Injections in future years, many people prefer this treatment than having surgery to repair the defect.

The only way to confirm whether the herniation retracted (this occurs some of the time, but based on my MRI the doctor said mine looked pretty severe) is to have another MRI. I also have a third ESI slated a couple of weeks from now. When I left after the second one, the doctor had me make an appointment for another procedure. The agreement is that if I achieve about 80% effectiveness from my POV, we should try the third one.

The fun stuff - why shot #2 wasn't as painful

You won't believe this. Well, the answer was kind of funny in a black humor kind of way. Prior to going into the OR, the doc asked if I wanted Valium (to calm me). I said no, I'm not nervous, and besides don't you want me to be lucid while you're working on me. And, I noted, as long as you're ok with me screaming or cursing while you work.

The student anesthesiologist went a little gray as we both laughed (the doc laughed and said "no" -- my guess a lot of patients come unglued).

So a few minutes later I'm face down on the table in the OR, gripping the handles in anticipation of being tortured again. I told the nurse about my cursing and screaming and to get ready for it; she said that was fine, "just don't bite me." Apparently some patient actually did this in response to a painful procedure.

And yes, the initial injection of lidocaine to numb the area for the real pain to come with the insertion of the catheter/needle hurt (more a quick sting and burn). Then the doctor guides the needle into the area of the spine where the steroid is to be delivered. This is where the excruciating pain occurred last time, escalating as the med was delivered into the affected area.

This time it was somewhat nausea inducing as he hit an area that he said he had to maneuver to avoid blood vessels. He had to remove the needle and reposition. All this is happening at a moderate pain level, no screaming or cursing.

Then he said "OK, I'm going to start putting in the medication now." I grimace and then I feel some pressure and mild pain for about 10 seconds. He then said "I'm half-way through. Do you need to rest?"

I'm completely taken aback because it took 10 minutes and four passes of push the plunger/screaming and cursing/take a breather to get it done last time. "Halfway through? Go ahead." Five seconds later he was done.

I was like WTF? That was it? I'm still face down on the table, and I said "How come this was so much less painful." His reply?

"Because I did it this time."

"Huh?" I said.

"Last time "Dr. So and So" did it."

Ah, yes, the joys of a teaching institution.

The trainee who was in the room last time was the one who actually did the procedure, with the doctor supervising. Jesus Christ -- of course since I was face down on the table both times, I didn't realize the other guy was doing the procedure -- I was the guinea pig.

I guess my discussion about screaming and cursing in the exam room this time made the doctor decide or take pity on me (or perhaps this other trainee was scared) and did it himself this time around.

What's next?

It's now almost a week since the shot and I have some odd residual problems -- cramping in my left leg (calf) along with random small spasms going from my rear end down my left leg and foot. There's no correlation to activity; it happens when I'm moving and when at rest. It's not painful, just annoying, but I'll need to monitor it. It's more of that "electrical storm" type of activity. My uneducated guess is the herniation is still aggravating the nerve in some way and the steroids are just masking any accompanying pain.

Since I am also having tailbone pain and spine pain higher (around the base of my neck), it would be good to get a look at this to see if my rheumatoid arthritis is causing additional deterioration. I see the surgeon on Friday to discuss what has transpired so far with the ESI and what my surgical options may be.

Some people prefer the ESIs to put off or avoid surgery; I'm more inclined to fix the problem rather than keep dosing myself with steroids.

During this period of relief I have to remind myself that I'm not cured -- that too much strain, twisting or lifting things may make the herniation worse. But for now, it's nice not to be in acute pain.

Monday, October 15, 2012

After the scare concerning tainted vials of methylprednisolone acetate used for epidural steroid injections (ESI) from the New England Compounding Center in Framingham, MA that caused meningitis that has killed hundreds of people -- the facility where I had my ESI did not use NECC vials -- it was just a waiting game to see whether I would see any benefit from it.

I was cautious because there wasn't a promise that the herniated disc would retract back once the inflammation was down -- no doctor can do that. But the hope that was I would get out of the acute pain that I've been in for what seems like an eternity.

So after a week I was kind of down because I was feeling no positive change from the steroids aside from the first couple of days, which is odd, but the same thing happened when I had a shot in the hip -- pain returned after a couple of days. The doctor (and most web sites) said normally you'd see benefit in 3-5 days. I was still in immense pain at night and first thing in the AM.

Last Thursday afternoon was a breakthrough day. Almost like a switch was flipped, the acute pain seemed to disappear. It was replaced with a a fair amount of stiffness in my lower back, but that was tolerable. Where there was no improvement was in the numbness/neuropathy that goes down the outside of my left leg and covers my entire foot. People with neuropathy know what I'm talking about but it's a paradox -- your limb feels dead, sometimes as if it isn't there, but alternately, it can be highly over-sensitive to touch -- socks and shoes with a lot of ridges or nubs can actually hurt a lot. Walking on uneven surfaces (like gravel) can be excruciating. Thank goodness it's not my right (driving) foot. I'd be screwed royally.

I tire quickly in this condition, but my strength in my left leg seems to be improving. Something odd is still going on with the nerve that is being pressed by the disc. Fairly frequently I'll have these shooting electrical-storm type sensations that shoot down inside my leg, causing spasms. It doesn't hurt, but when this occurred prior to the ESI, it hurt a lot.

A beautiful day

But on to this past Saturday -- it was a great day with beautiful weather here in Durham. I was able to walk/limp around at the Farmer's Market downtown and then at Costco, which of course is also a good amount of walking since it's a big box store. It's nice to be able to go out and enjoy the fall weather -- even if only for short bits of walking at a time. It's so much better than being nearly housebound and in the wretched pain I was in for nearly two months.

Thankfully I've not suffered from high blood glucose from the ESI; I was warned about it but I've been monitoring and seen that they've actually been better -- probably from the reduced pain levels. Pain can shoot up blood sugars - it certainly has in my case.

It's not a cure

I have to go for another ESI on October 23; the last experience was so excruciating that I nearly passed out from it. I had nightmares for days. I look at this as a painful experiment -- if I can get to 80% of my normal self (not focusing on managing this particular chronic pain; I've got enough already), I can better research my surgery options not under duress. What I don't want is to keep pumping steroids into my system quarterly, which is what many people do to put off surgery. If I've got a bad disc, I want to fix it. I'm not particularly scared of surgery; I've had a number of them already, though not on my spine. I should note that the doctor performing the ESI is an anesthesiologist, not a surgeon (I've also seen a surgeon), so the former is working from the pain management perspective, not necessarily an advocate for surgery. He hopes the ESI can address my issues, but is realistic that I may still require surgery.

Some videos. First, an explanation the ESI procedure and its benefits and risks. The doctor here talks about patients "find the procedure easy to go through, with only minor pressure, pain and discomfort."

Uh. That's BULLSH*T. That may be true for some patients. In my case they had to inject the steroid in 4 passes (the needle stayed in, but they couldn't push it all in at once because the space in the disc they needed to place it was very small -- damaged disc [L4-L5]). The two doctors were not surprised that I was screaming during the procedure. As I said in my post on the procedure:

Let's just say the injection as horrifically painful -- like something in a bad horror movie with a torture rack. My 10 on the pain scale was the initial acute herniation that sent me to the ER, rating about as bad as a kidney stone attack. This procedure was a 9-10, but not a sustained high mark of excruciation...good thing they have grips for you to hold on to while you are screaming and cursing on the operating table.

This is next video makes me queasy since I couldn't see what was going on during my procedure (you're on your tummy), but based on the pain all I could imagine was some giant needle going in, but of course it was not.

My comments on the video - the first lidocaine injection (local pain killer) didn't hurt much at all. The wiggling as the needle guided into the spine is uncomfortable, but tolerable. Once the target area is located and hit, it's a horrific stab going in. In this video the entire dose of steroid is injected at once. As I said, the location of my herniation was so tight to fill they did it in four passes with about 30 seconds to a minute in between so I could slow my breathing (I was hyperventilating and screaming), and "rest" before they pushed again.

When they said they were "halfway through" I thought I was going to die. But I tried to think about being somewhere else and said go ahead. About this time they added more lidocaine, presumably to help during recovery. The last push of the needle was when I thought I would pass out the pain was so great. I wish my experience was that of the patient in this vid.

I was so weak getting off of the table after the procedure I practically slipped down into the wheelchair. The lidocaine kicked in about 15 minutes later, leaving me numb from the waist down. No pain.

But fast forward to today - it's Monday and I'm back at work, albeit I have to keep shifting chairs because none are ideal for sitting at length for me in this state. Driving in didn't hurt. I did have a hard time getting up and ready for work because of my rheumatoid arthritis, which is currently untreated because I'm off of it until I'm sure I won't have surgery any time soon. The effectiveness of the second ESI will let me know if I can go back on Enbrel.

Friday, October 5, 2012

Months ago I purchased tickets to a Journey concert (featuring Loverboy and Pat Benatar as openers) in Greensboro, NC, and I was quite fortunate -- when I hopped on the Tickemaster site I was able to nab front-row seats. I tucked the confirmation email away and went about my business.

I was almost in tears thinking there's no way I'd be in any condition to see my favorite band, as the October 3 date was looming. I was in such a bad way I was telecommuting since driving was clearly not an option for me. Short walks in a store completely KOed me. My wife Kate took me to rent a wheelchair so in the worst-case scenario she'd roll me to the Greensboro Coliseum.

Fate would have it that things would get even more complicated when I was told that I would get that spine steroid injection on October 2 -- the day before the concert. The side effects from the surgical procedure (and it's painful) made it unclear whether that would prevent me from going to the concert.

Off to Greensboro

Well, I got well-medicated to manage the pretty horrible pain and Kate folded me into the car the next day and we were off to the concert with the wheelchair in the back of the Subaru. We got a handicapped space at the venue and then I had to decide whether to use the chair. My guess that the Coliseum's pre-Americans With Disabilities Act (ADA) status meant it wasn't wheelchair friendly. I decided to limp my way in. I wasn't wrong. Narrow staircases and aisles made it a bit troublesome; what I wonder is if I did have a wheelchair, where were they going to put it since I had front row seats and they were packed in there tight.

I was just glad to get there and into the front area seats because getting out of there was nearly impossible if you're physically compromised. There was a chance I would get meet and greet for Journey and Pat Benatar, but it wasn't meant to be this time...it was on with the show.

For me, almost as fun as jamming to the live music I love is taking photos. I had two camera with me -- a point-and-shoot Panasonic DMC-2510 Lumix and an Olympus Stylus. Since I was in the front row, I was able to rely on leaning on the front rail to hold myself up most of the time while standing. It was an exercise in pain once Journey was up, but nothing was going to stop me.

Loverboy

First up was Canadian 80s rock group Loverboy ("Turn Me Loose" and "Working For The Weekend" you may know), made up of Mike Reno, Paul Dean, Doug Johnson, Matt Frenette, and Ken "Spider" Sinnaeve.

They did a great of warming up the crowd with hits; what was really wonderful to see was just how happy they were on stage performing - you could see that lead singer Mike Reno (whose voice is still fab), was just having the time of his life up there.

Here's "Working for the Weekend" --

And "Turn Me Loose" - epic 80s cheez!

At some point in the set "Spider" Sinnaeve tossed a guitar pick out that I caught:

Pat Benatar

The thrill of the night was seeing Pat Benatar, who simply belted out her hits in that acetylene-torch voice that she's clearly taken care of well. Onstage with her was her husband and musical partner for 30+ years, guitarist Neil Giraldo.

The crowd when wild on a couple of her hits - "Love is a Battlefield" was tremendous - she hit all of those high notes, and with POWER. Her classically trained voice is just amazing. And the banter between the couple was genuine and hilarious.

How about checking out "Heartbreaker" (with a little "Ring of Fire" added in)!

A real treat was when Journey's Deen Castronovo sat in on drums and pounded out "Hit Me With Your Best Shot."

Just memorable. Let's just say there was a lot of dancing and fist-pumping going on in the venue.

Nothing beats seats in the front. I saw Journey in row 3 at Planet Hollywood in Vegas last year, then saw Hall & Oates a few months ago about 25 rows back. No comparison in terms of fan experience -- being up front (especially if you love taking photos) does matter.

The setlist: Faith in the Heartland, Anyway You Want It, Ask the Lonely, Only the Young, Never Walk Away, Anytime, Mother Father (Deen), Faithfully, Stone in Love, Keep on Runnin' (Deen), Lights, Wheel in the Sky, Escape, Open Arms, Be Good to Yourself, Don't Stop Believing, Separate Ways, Lovin', Touchin' Squeezing.

Since I'm a hardcore fan (my fave period of songs is the Perry-Rolie era), the real treat of a live concert is getting to hear lesser-known (and played) songs. Of course the band knows the bulk of ticket holders are casual fans looking to hear Lights, Don't Stop Believing, Open Arms, Faithfully and the like, so the set is front-loaded with the big hits. I actually took short sit-down breaks to recover during those numbers. Not that I dislike the popular songs, mind you, they're pretty much done as a concert experience for me. I imagine Neal, Jon, and Ross can sleep-play through those.

It was good to see them open with Faith in the Heartland, a Steve Augeri-era tune that Arnel re-recorded with the band for the album Revelation and it was so welcome to see Deen Castronovo doing lead vocals this time -- he has a stellar tenor well-suited for Mother Father and Keep On Runnin'. When I saw the band last year, Deen didn't get his vocal moment in the spotlight and it was sorely missed. Trading off lead with Arnel also gives AP a chance for a break -- singing the Journey catalog is hard on vocalists.

Also, when Journey is on a triple bill, that means not a lot of play time left for old nuggets. One was Anytime, which appeared on the album Infinity that featured shared vocals between Gregg Rolie and Steve Perry; it's handled soulfully now by Jonathan Cain and Arnel Pineda. While the masses in the Coliseum didn't leapup for this one, the fans in my section were up on their feet and stoked when it started -- and knew the lyrics by heart.

Arnel received and wore a Carolina Panther's shirt - that was fun.

Since I'm a big fan and was shooting a ton of pix, I have to note the good and could-be-better that night:

Arnel pours his heart out into the performance every single time. He has a soaring powerful tenor that fills the venue -- how he gets that sound out of that compact body I'll never know. He hits those notes in chest and head voice -- no falsetto. And he excels at interaction with the fans (even signing a t-shirt during one of Neal's solos) throughout the evening, and covers the whole stage to shake hands and point to folks in the audience. He has never failed to entertain me.

Neal Schon, who has a right to be jaded out there after all these years of performing, still looks like he enjoys playing to the crowd. The axe man didn't phone it in this night; I got a ton of great shots that show him on a variety of gear churning out great licks. There was not a lot of excessive noodling solos this time (something that was oddly distracting last year); he was back to giving us great melodic licks -- and did a great "Star Spangled Banner."

Jonathan Cain -- someone needs to nudge the gifted singer-songwriter to smile more. I really had to work hard to capture photos when he didn't look overly serious or even bored at times, particularly when he stepped away from the keyboard to move center stage while playing guitar alongside bassist (and founding member of the band, Ross Valory, who looked a tad bored as well, but worked the stage well). Ross, by the way, is underrated; his work on several songs are the heart of the Journey sound -- Neal's solo on "Stone in Love" is epic, but listen to the equally stellar, bassline; it's been given "new life" in the remastered Greatest Hits 2.

Almost a smile...

I met Jonathan Cain (who penned "Don't Stop Believing") last year at a meet-and-greet (see pic below) and he's a wonderful, warm guy, but on this night he seemed to phone it in.Deen Castronovo - I don't know how the guy doesn't destroy his drum kit during a show he pounds so hard (imagine a cute human version of the Muppet's "Animal" - meant sompletely as a compliment; Deeno's spiked 'do just makes it even more apt!).

He always give it his all as well; he always looks like he's having a great time out there for fans. And as I said above, he's capable of some heavenly, emotive performances, particularly on Mother Father. I hope they keep his lead singing opportunities in the mix.

Another vid: Escape -- rocked the house!

They closed with Separate Ways and Lovin', Touchin' Squeezing. Last year they opened with SW, and since it's a hard, epic song, it plays better earlier rather than later for me. And LTS, well, it's one of those standards I wish they'd switch out for something fresh. But I understand; the band's playing for the majority of the folks there - some born long after the band formed, or newcomers to fandom, not the diehard gray hairs.

Tuesday, October 2, 2012

Now as you read this horror show description remember -- for people with unbearable chronic or acute back conditions involving the spine (my MRI showed my herniation was bad), ESIs can give them back their lives and possibly avoid surgery.
Let's just say the injection as horrifically painful -- like something in a bad horror movie with a torture rack. My 10 on the pain scale was the initial acute herniation that sent me to the ER, rating about as bad as a kidney stone attack. This procedure was a 9-10, but not a sustained high mark of excruciation. But it's really the nature of the beast, after all, we're talking about your spine.

In the operating room (since they don't put you out you're awake for it all), they noted during the procedure just how small a space there was between the damaged disc (L4-L5) to inject all of the steroid and lidocaine, so they had to do it in very painful waves.

Good thing they have grips for you to hold onto while you are screaming and cursing on the operating table.

They had to use various views on the fluoroscopy to pinpoint the area to inject into as my level of "discomfort" rose. I was at one point hyperventilating and nauseous (I only had a small bowl of cereal since last night, knowing nausea was a possibility). The desire to hurl passed -- one of the nurses held an alcohol pad under my nose to quell it -- that actually helped.

And, I can say that the staff and doctors were very responsive and actually quite amusing; I guess having patients cursing and screaming all the time while they are trying to help them. I didn't feel like I was treated like a piece of meat. They were making fun of my Journey obsession to help distract me from the searing pain, lol.

But it's over and I'm so numb that it was hard to get into my house. The lidocaine should wear off in 6-8 hours then I have to ice it, take pain meds and hope for no fever or side effects. We'll see how it goes overnight. Fingers crossed.

I'm scheduled to go back in 3 weeks, possibly for another procedure. Kate snapped this one of me after I was wheeled to the recovery room:

The jury is out on whether the initial shot will work. I should know in 3-5 days whether I will have good pain relief, and then, as I said above, I may have another shot, this time focusing on the spinal area affecting my left hip/leg, where I am experiencing the most weakness and numbness/pain.

Monday, October 1, 2012

I'm trying to stay positive -- thus the thumbs-up photo to indicate that I'm hanging in there despite unrelenting pain. It was a rough weekend. Extremely rough rain, lots of thunderstorms and general crappy weather. It's very good for our reservoirs and plant life in the state. NC has been fortunate in not having tragic droughts that we've seen in the midwest.

Unfortunately since I've been off of my rheumatoid arthritis medications for almost a month now, and I this weather meant a bad flare-up of joint pain (and resulting extreme fatigue) that made me pretty worthless on Saturday. I've been off of the meds because I don't know when/if I will need surgery to address the bad herniated disc and other degenerating crap in my spine. Tomorrow I go for the epidural steroid injection (ESI), that may or may not give me relief. I'll know in about a week. This is the conservative first whack at things.

Right: am I crazy running this pretty miserable web cam shot of myself? Maybe I should be -- no makeup, half sleepy, but reminding myself that things could be worse, right? At this point my vanity is at a pretty low level. My only real nod is that I wear hats when I go out because I've enough hair from RA meds to make me self-conscious.

I was mildly better on Sunday as the front passed and got some light housework done, but that put me in bed quite early. A former early riser (5:30), it's hard to get myself showered, dressed and sentient before 9 when I'm in this condition. My hope is that the back issues adding to my chronic pain issues can be addressed ASAP.

Of course today -- Monday -- another front with more rain blew in overnight and I'm sitting here still working from home, with my wrists all bound with Ace bandages to support the joints that are on fire. At least I can accomplish something. I don't know what I would do if I didn't have the capacity to work. It's horrible being trapped in a body so wracked with multiple ailments that are hard to treat in unison. Each represents another hurdle that I've been able to adapt to -- diabetes, PCOS, fibromyalgia, rheumatoid arthritis, and now these spine issues.

The triple punch of the fibro, RA and the back -- all in the last couple of years -- has really challenged me emotionally, physically, and professionally. You can only cry for so much before the anger and resolve take over (at least it is for me, I don't lean toward a depressive state, I'm more of an obsessive problem-solver. The problem with that is it's pretty difficult to accept what you cannot change or have control over. My health decline is frustrating because the target keeps moving as your energy is drained by having to navigate endless paperwork that our health "care" system puts in your way, the need to keep track of various doctors and providers to make sure your interests are met in those few moments you have with them, the strain it puts on yourself and loved ones...you know the drill. I hate relying on people, since I've been self-reliant to the extreme for so long. It's hard to let others take care of you. It wasn't until the RA hurdle was thrown up that I largely gave up trying to do it all for myself. And it wasn't so bad. Just kind of demoralizing.

I've read up on this and spoken with the doctor performing the procedure so I feel fairly confident things will go ok. What neither of us know is my individual reaction -- side effects like fever, infection and soreness are just a roll of the dice. I already know my blood sugar levels will be adversely affected so I'll have to watch that carefully and may need more insulin.

All that matters is that I'm well enough Wed afternoon for Kate to drive me to Greensboro for the Journey concert, lol. Pat Benatar opens for the band and I just found out from Facebook friend Ron Clapham that we'll be able to get to a meet and greet. Many many thanks, Ron. More motivation to get there!